Vol. 6 – What Can the Amish Tell Us About Early-Onset Bipolar Disorder?

Every day we receive numerous emails from parents who have read our book or who have come to our site for information. Sadly, and all too frequently, their questions and comments are interlaced with some mention of the guilt or self-blame they feel about their children’s behaviors and illness. Doctors, family members– in addition to the greater outside world– have pointed out that they were not strict enough (or that they were too strict), that they were not consistent, or that the family is dysfunctional (or to use a family system’sphrase: “He is acting out the family pathology”). Mothers and fathers write that despite being veterans of multiple parenting classes, they fear they have not provided the “right” environment for their children, and that little has changed the behavior of their ill sons and daughters.

So we thought it would be interesting to take a look at a population of children who come from a completely pacifistic society where anger or violence are never displayed,and where children are expected to be well-behaved, submissive to authority, quiet, and non-intrusive around adults. These children have never seen television, the nightly news or scary or gory movies, and they have never played Nintendo. They also come from families who have large sibships who tend to act as role models, and are surrounded by cousins and peers who follow the traditions of the community closely and thus provide additional role models.

Where do such children grow up? In Lancaster, Pennsylvania in a community of Old Order Amish–people who dress in plain clothes and who live much as they did when they came to America in the eighteenth century. Dr. Janice Egeland has been studying this unique culture for over 23 years collecting clinical,genetic and epidemiological data from more than 30 family pedigrees who have been identified as carrying the gene(s) for bipolar disorder (see Overcoming Depression, 3rd ed. pages 58-64).

Having access to all the records of the families in the community who have or who are at risk for developing bipolar disorder, Dr. Egeland and her colleagues recently turned their attention to early records of bipolar adults in an attempt to determine possible childhood predictors of the illness. The findings were reported in the October 2000 edition of the Journal of the American Academy of Child and Adolescent Psychiatry and they tell us many things. Not only do they highlight the early symptoms that occur before the onset of the illness in this population, but they offer some fascinating insights into how much of a bipolar childs’ behavior might be internally driven versus how much might be culturally determined.

It must be said that the Amish have no more bipolar disorder than the rest of the population, but in many ways they provide a natural laboratory for genetic and clinical research. They are an ultraconservative religious sect with a well-defined, closed population, with little migration into or out of the community. They can trace their ancestry back to 30 progenitors from Switzerland, and they maintain extensive genealogical records. The community encourages a highbirth rate, so researchers can study large families and sibships. Very important, this community prohibits the use of alcohol and drugs, substances known to complicate diagnostic assessment, and the Amish seek psychiatric treatment when necessary because they feel mental illness interferes with a person’s relationship with God.

The Study

Dr. Egeland and her colleagues designed the study to look at the social histories taken at the first admission to a hospital for psychiatric evaluation and treatment. At the time of this first admission, none of the 58 patients had been diagnosed, but all went on to develop bipolar I disorder.

The objective of the study was to unearth the narrative histories in these intake reports in search of prodromal or early features of juvenile onset bipolar disorder. Three raters looked at the record information individually using a semistructured coding “Log” designed to note any mention of mood; any “objective”symptoms such as appetite, sleep, and behavior; and any “subjective”symptoms such as cognition and feelings. For each entry, the raters coded the age and/or developmental stage at which the family said it occurred. In the instances where family informants did not state a specific age for an early symptom or behavior, guidelines were used based on the meaning of age-graded terms among the Amish. For example, “school years” were coded as age 8, and “Amish vocational classes and work” as age 14. Also, any evidence that a feature was episodic was noted carefully.

Once the independent coding was completed, the three Logs were compared to confirm accuracy.

Dr. Egeland’s group than compared the sample by gender and found that both males and females had the mood and energy symptoms, but that significant gender differences were found when they compared several of the other items. For instance, the males had more grandiosity, excessive behaviors, and lowered inhibitions; and the females were more frequently cited as crying, having more obsessive-compulsive traits, and as being more stubborn.

Because the researchers wanted to examine the patterns of symptoms in early childhood and adolescence, they then excluded 18 of the patients who had symptoms of the illness at an older age and looked more closely at the 40 patients whose records indicated very early signs.

The most frequently reported symptoms were divided into four age epochs: 0-6 years; 7-10 years; 11-12years, and 13-15 years.

In the youngest age group (0-6), 13 cases revealed that 23% reported “cried,” 23% had early periods of increased energy or were more active; and 23% were bold/demanding. Many of these symptoms were episodic in nature. An admission record of a 15-year-old boy revealed that the parents noted that by age 6 he had periods during which he was noticeably different from other boys with respect to the following: “fussy” (i.e. cried more often), irritable moods, quick-tempered, anger dyscontrol, conduct problems, and “being a terrible tease.” His parents told the social worker doing the hospital intake that from a very young age he was a”fight cat” and that they could not leave him at home with siblings.

In the 7-10 epoch, the most frequent observation was irritable mood (29%)–all but one reported that these periods of irritability were recurrent. 25% were reported as “overly sensitive.”

It is worth taking a look at the researchers’comments on the trait of “oversensitivity.” They report that “Parents or teachers who identify a child as ‘overly sensitive’ refer to a child who has a heightened sense of awareness. If one observes such children, their ‘social skin’ appears to be overexposed.They may seem ‘hyperalert’ to the feelings of others–peers and adults alike. It is as though an electrical field surrounds these youngsters and their antennae pick up all possible signals.”

The children in the 7-10 age category also had higher rates of other behavioral patterns, specifically, cried, bold/demanding,quick-tempered, stubborn, and conduct problems (all traits terribly incongruent with Amish culture).

Between the years of 11-12, the mood changes and energy symptoms (both increased and decreased) became more evident . 50% had depressed mood; 30% had either decreased or increased energy and noticeable mood shifts.

Among the 13-15 age group,depressed mood still ranked first (38%), but for the first time we see two primary symptoms of mania–decreased sleep and increased talkativeness. According to the authors of the report: “Evidence regarding bold behaviors, lack of impulse control, and various disciplinary problems might now be interpreted with greater confidence as representing the conventional ‘excessive behavior’ of a nascent manic illness.”The manic-like symptoms such as grandiosity and excessive behaviors–in this group–seem to manifest later in adolescence than reports studying early symptoms in non-Amish children.

With permission,we reprint Table 2 of this study:

The Girl Who Bossed Others and Was Fearful

In this article, Dr. Egeland offers three case vignettes that illustrate some of these early symptoms. We would like to reprint one in particular because it ends on a hopeful note with a young woman who suffered three hospitalizations and had a very “stormy” adolescence, doing well now, married, and an active member of the community. This is Emma’s story:

The best way to convey the pattern for Emma is to quote directly from the coding sheet of prodromal symptoms, all of which were reported as episodic in nature:

At age 12 there were also nonepisodic symptoms such as energy loss, ruminations, fears/phobias, panic symptoms, worried/fearful/tense.

Emma’s story begins sadly and ends on a more hopeful, positive note. Emma was a “problem child from the start.” She crawled everywhere and required much more attention than her siblings. She was called a “bold” child who was self-centered and who acted “too adult.” By age 10 she “bossed her younger sibs” and abdicated her work to the older ones. Alternating moods, evident by age 10 or 11 were characterized as “moody and starey” versus “irritable and bossy.” Her parents said she was “changeable.”

Emma herself recalled having “weak periods” and a problem expressing herself. She, like others, realized she was “different and felt ashamed.” Her mother said she worked harder in school for her grades than most but “trailed along” and was only tolerated by the others. “She always irked other children.” She was greedy, did not share, and could not be trusted. During her childhood, Emma used rituals to”keep herself together” and expressed a variety of fears(storms/dying). She was upset easily, was very sensitive, and angered quickly. Over time her moods intensified.

The onset of bipolar I illness was at age 16, when Emma was first hospitalized with a mixed clinical picture of both euphoric and irritable moods. After three months, she appeared improved but was noncompliant with medications and was readmitted twice in “stormy spells.” As she accepted her illness and treatment, her world came into focus. For the first two years of stability, Emma quilted at home and then decided to teach Amish school, a stressful job in which she was successful. She is doing very well, continues to take medication, and has married.

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Dr. Egeland and her team realize how important it would be to define clearly which prodromal symptoms are involved in the ultimate manifestation of a bipolar disorder. To that end, they have been conducting a prospective investigation of children at high risk and children from a matched sample of normal controls. They are now looking at the narratives of her sample of 200 “at-risk” and “control” family children and have promised us a future interview when the data is assembled. Should they be able to create a reliable prodromal profile, a child could be identified and treated early– before a severe, recurrent pattern of illness takes hold and an entire family goes down in the process.

In closing, we’d like to point out that although the Amish culture has strong social injunctions against boastful, demanding, intrusive, irritable and bossy behaviors, these early precursors to a bipolar disorder emerged–as surely as they do in the world outside Lancaster, Pennsylvania. While all families could strive to be more functional, and a steady diet of violent television and video games is hardly the stuff of a healthy ego, we hope the report of this study eases the debilitating feelings of guilt and shame in parents who must struggle to deal with a temperamentally difficult child whose symptoms in early childhood are seen only through a glass darkly.

We send you our best,

Demitri F. Papolos, M.D. and Janice Papolos

Additional Note:

Because of the prescribing practices in the world outside the Amish culture, it is important to talk about depressed mood as a cardinal symptom seen early in these Amish bipolar adults’ histories.Today, any child brought to the attention of a clinician whose primary symptoms include depressed mood, decreased energy, extreme sensitivity, and irritability is likely to be diagnosed with unipolar depression and placed on an antidepressant– most likely an SSRI such as Prozac, Paxil, Zoloft, Celexa, or other antidepressants such as Effexor or Wellbutrin.

Yet not only were these symptoms early precursors of a bipolar disorder in this Amish group, but Dr. Barbara Geller of Washington University in St. Louis recently reported on the ten-year follow-up of a group of 72 children who were originally diagnosed with depression before puberty (the average age atdiagnosis was 10). By the age of 20, nearly half–48%– had developed the bipolar form of the disorder. Since children with co-morbid ADHD were excluded from this study, it is possible that these rates of switching would have been even higher.

Antidepressants are known to increase cycling patterns and possibly advance the course of a bipolar disorder. Therefore, it behooves all clinicians(and parents) to keep these two studies in mind before commencing any trials of antidepressants.

(The authors wish to thank LaVurne Williams at the American Academy of Child and Adolescent Psychiatry for her help in facilitating the permission to use materials from Dr. Egeland’s article. For more information about the American Academy of Child and Adolescent Psychiatry visit their web site at www.aacap.org.)

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